Anyone experience with Endometriosis & cysts?

[Kimross1]

Hey ladies,

I went for my baseline scan today to get started with our next IVF cycle & they found a 40+cm cyst in my ovary with endometriosis. The nurse explained to me how it occurs but I don’t think I asked enough questions tbh because I’m now googling it like a mad woman and it’s driving me insane 🙈.

I have a repeat scan for a second opinion on Tuesday at the clinic and there going to go from there basically, she said that they either give you injections or you need it surgically removing which is obviously frustrating and annoying as we’ve waited a long time to get trying again because of a car accident I was in and it just wasn’t the right time because of my Injuries I had and everything going on. If surgery is needed to remove it then I can see this being a even longer wait with COVID-19. Obviously the hospitals aren’t doing operations unless absolutely necessary because of the whole pandemic which is understandable 😩. (Sorry needed to rant)

For you ladies that have had it, how long did you wait to get a appointment with the NHS and what did they do to get rid of it etc?

From speaking with the nurse today it explains why I’ve been in so much pain with my ovaries but I just thought it was ‘normal’ as I have regular periods and from my previous cycles they’ve never detected endometriosis.

Sorry for the long post but I just needed to vent and see if any one has any opinions on this ❤️

Thanks in advance! ✨❤️

[NDE1987]

Hello! I just wanted you wish you all the best. I had a big cycts on one of my cycles and I was told to have a blood test to see if it was an active cyst luckily the bloods came back ok and I was allowed to continue with my cycle.

So sorry that you have been through alot. Honestly this covid has changed so many plans. I hope the cycle can go ahead or they can give you medication. But please remember not to be stressed and take one day at a time xx

[Kimross1 in reply to NDE1987]

Hi NDE1987,Thanks for your reply! Ye that sounds similar to what I’ve had back in 2018 when I did IVF to get my little girl luckily that had gone right down so I could continue then.

This one looks more severe by the sounds of it. I hope I can just do the injections and it goes 😩. I’m going to ring my GP tomorrow to and see what she says about it as well as I’ve had to have surgery in the past. In the back of my mind I kind of thought to myself that there would be something wrong. But I will try and stay positive Thank you so much for your kind words, means a lot ❤️

[NDE1987 in reply to Kimross1]

As a fellow endometriosis sufferer I know too well about cysts and how they can be buggers!!! I am pregnant with my second and I was in so much pain that I thought I was having an ectopic, turned out that I had a cyst. So I definitely know how painful these cysts can be!! Wishing you all the best and do keep us updated! X

[Turtle77]

Hi there, sorry to hear about the news at your scan. This is my first post but I thought I'd respond because I have endometriosis and a 4cm endometrioma (cyst filled with old blood - so they call it a chocolate cyst) on my right ovary. The Dr's advice was to have surgery to drain it (not excise it because that impacts on the ovary and your ovarian reserve). However like you I was worried about waiting times (even private hospitals have been requisitioned by the NHS for Covid). Having had endometriosis for a while, my understanding is that these cysts do not really become smaller (because they are filled with old blood). Other types of cysts may do however - is what the injection is for?

The issue is that with a cyst they may not be able to collect all your eggs so the clinics say to have this addressed to increase your chances. We did not want to wait any longer as every month counts and I was also told if the cyst/endometrioma is drained it comes back really quickly anyway. In the end egg collection was much more successful than anticipated (even though I had an early miscarriage but that is probably unrelated). Sorry for long post, I just wanted to say that it is possible to get some eggs even with the cyst and we had to weight up all the factors. For us further delay was not something we wanted to wait for.

Hope this helps and best of luck with what you chose to do next x

[Kimross1 in reply to Turtle77]

Hi turtle77, Thank you so much for your response it’s good to here other people’s experiences. A few people have said the same now about the surgery etc. It’s a nightmare isn’t it I’ve never been told I’ve got endometriosis before but I think it could be from tissue that was removed from my tubes back in 2016 and obviously gone to my ovaries and then made the cyst.

Did you not end up having surgery in the end then because of the likelihood of it coming back straight away?

Oh no!! So sorry to hear about your loss it’s definitely a hard journey 😩 my heart goes out to you ❤️..

I suppose I’ll just have to see what they say on Tuesday . I definitely don’t want to be waiting too long I’d rather just crack on but I think they don’t like you stimming if it’s very large. We’l see! The best of luck to you too hunn xx

[butterfliez]

Hi there sorry for your current situation i hope all goes well at your next appointment

I had a similar experience to you, in 2018 I started our first ivf cycle only to have my baseline scan detect a large cyst it was 10cm , they didn’t actually know what it was at this time so they cancelled the ivf & reffed me back to gyne, had bloods & ct scan , but had to be sent for a laparoscopy which from referral to operation took 9 months on the urgent list ( this was before covid hit the uk nov 19) , which is where they discovered it was endometrioma cyst & diagnosed me with endometriosis in both ovaries , they drained the cyst.

Went back to ivf clinic in January 2020 6 weeks later for another scan & it had returned but only measuring 4cm .I was given the proststap injections for 3 months to try to shrink it , it hadn’t but it hadn’t grown either which was good

I had one ivf cycle last March they collected eggs from only one ovary resulted in 3. Fast forward to today I just got back from my baseline scan for cycle 2 , my cyst is measured at 5cm , they are happy to continue with this because surgery would take too long & isn’t guaranteed to work as before .

Your cyst sounds very large but it may be worth having the injections to stop further growth in the meantime , I expect you will have to have thus surgically removed at some point .

See how the next opinion goes & what the best options are for your situation. Wishing you all the best X

[Kimross1 in reply to butterfliez]

Hi butterfliez, thank you for your reply! Wow it’s a long process isn’t it! It’s so fustrating when you have all these hurdles thrown at you when it’s so hard for us to get pregnant and can’t even go ahead with the only option we have IVF. It’s emotionally draining never mind physical sometimes 😩.

So how did they drain the cyst? Did they do it whilst doing the laparoscopy? And the injections did the ivf clinic prescribe these for you or the gynaecologist at the hospital?

Sorry for all the questions but sounds very similar to what the nurse described will happen depending on this next scan on Tuesday. I rung my GP today and he said he’ll wait for the referral from the clinic on Tuesday and send me for some blood tests and then go from there. It’s just the waiting isn’t it 😩🙈.

The best of luck for your next cycle hunn! ❤️ Xx

[butterfliez in reply to Kimross1]

I totally agree it is so frustrating all the waiting & hurdles along the way , is definitely a tough journey

As difficult as it is all we can do is keep positive & hopeful in the meantime

Yes so it was during the laparoscopy that they removed the cyst , ( the surgeon said as they attempted this it burst anyway so they drained it all out )

They also said my endometriosis wasn’t anywhere else just on the ovaries which then causes these endo cysts. I think it’s really common for them to reoccur.

Aw that’s ok ask away !

With the prostap injections the fertility clinic prescribed these to me & the nurse has to inject them once a month

They put you in a temporary menopause to stop your periods ( shuts everything down ) .

So it all depends on what they say to you next week , if they say to have surgery first you can discuss this option with them . They may attempt the injections first before cancelling your ivf cycle.

Whatever happens there is options.

It’s all so overwhelming at first isn’t it I know how you must be feeling having had this happen to me X

[Fazmin]

Hi hun, I’ve been suffering from endometriosis and from my experience scans alone cannot determine if a cyst is endometriosis. I had a surgery in 2015 and only after the surgery the Dr was able to say for certain that it’s endometriosis. I had another surgery in 2019 and only then I was referred for IVF. Other cysts will shrink, come and go in between cycles but these kind won’t unfortunately. I’m hoping that yours isn’t endometriosis and wishing you all the best for a successful cycle. xx

[LA-B-19]

Hi, I am currently waiting for surgery to drain an 8cm endometrioma (cyst) from my ovary. It was present at my baseline scan for my first round of IVF. They only got 2 eggs from the ovary with the cyst (my other ovary was inaccessible). They told me they wanted me to have it drained before I can do another round. I will be put into a chemical menopause before surgery and up to IVF to try to avoid it refilling. NHS waiting times for surgery are approx 18 months, currently private surgery is 4-6 months (normally private is about 4 weeks). Covid suuuuucks as does endometriosis.